- Diseases, Disorders & Conditions
Responding to Mean Words from Alzheimer's Patients
Pain inside forces pain outside.
Mean words from my mother caused my greatest frustration. Well-meaning individuals frustrated me even more when they advised me not to take it personally.
"It’s not her, it's the Alzheimer’s talking,” they said.
If a stone pelts you in the forehead, would it make any difference who threw it?
That was the question in my head but I thought most people would respond by explaining the difference between a physical and a mental assault. They probably would not understand that sometimes the mean words felt like blows across my chest and weakened me both physically and mentally.
Bob DeMarco, Founder and Editor of the Alzheimer's Reading Room, suggests that the way to stop the pain from mean words is to stop the words. He points out that caregivers unintentionally contribute to the causes of the patients’ meanness; and that meanness in the Alzheimer’s world has different connotations than it does outside dementia.
As a result of following his proposal, meanness and hurt have dwindled significantly in my situation. Here are four steps that proved effective.
Caregivers may cause or curb the meanness.
(1) Notice the Events Preceding the Meanness
DeMarco suggests writing down the incidents that precede the outbursts until a pattern becomes obvious. I knew immediately what some of my contributing actions were:
- Giving a command or sounding like I was in control. (“Time for you to get dressed.”)
- Pointing out that she did something wrong. (“You washed the toothpaste from the toothbrush but you haven’t brushed your teeth.”)
- Referring to her confusion. (“The floor may seem wet to you, but it is not.”)
My mother became defensive to statements like these, and I understood that the defensiveness came from the disease and not from her. Before Alzheimer’s, she spoke very little compared to the long-winded excuses and arguments she gave in her defense. Rebuttals made her angry, and it was apparent that her strongest expressions of outrage manifested themselves in verbal abuse.
Recognizing the power to cause or to curb that meanness was the start to the solution.
(2) Initiate the Change
Can you guess from the things that upset my mother that she likes to be in control, doesn’t like to admit that she’s wrong, and is in denial about her confusion?
It is natural for caregivers to want to set the patients straight. We prefer them to submit to their debilitation, and trust themselves to our control. Truth is, they have no ability to reason or to cooperate with us. Any changes in the stress level created by these adverse situations have to be initiated by the caregiver.
It begins with weighing our words carefully, and ignoring their statements which sound like arguments in the making. It takes time and practice but it pays off.
- Instead of commands, offer help. "Let me help you get dressed." The patient may just sit there looking at the clothes. She needs the help and she cooperates when the offer is made. This is true in most situations where inactivity might resemble rebellion.
- Without mentioning the wrong action, offer, “Let me put some more toothpaste on the toothbrush.”
- Without referring to her confusion, suggest, “Hold my hand and let’s walk together.”
Situations which I previously avoided have now become welcome challenges to see how much I have improved in my communication with her. Sometimes I am shocked at how easily we accomplish things together. It’s not perfect, but when I make a mistake, I immediately think of how to correct my fault the next time.
- How the Loss of Memory Works in Alzheimers, and How Understanding This Could Help You
Ever wonder why mom has no idea that she had breakfast but knows the color of the dress she wore at Easter 40 years ago? Because the old memory was stored while the newest memory is no longer stored because the hippocampus is no longer doing its job.
(3) Enter the Alzheimer's World
DeMarco recognizes two different worlds between which caregivers learn to go back and forth.
- The Real World is the world in which we think people behave rationally.
- The other is the world where people with dementia live, and he refuses to call them irrational; they are just “deeply forgetful.”
He thinks that it is the people in the Real World who become irrational in their expectations of people from the forgetful world, and that is a fact for us to consider. After all, the forgetful people are using the brains they have left; and when they get things right, it is much more of an accomplishment on their part than it is for people in the Real World.
The red blobs show the location of the hippocampus (the memory gateway) in the temporal lobes of the human brain.
Carole Larkin, Certified Geriatric Care Manager, explains that the hippocampus is the part of the brain that registers information and sends it to other storage areas. It is one of the earliest parts of the brain damaged by Alzheimer’s; it stops registering instructions, answers to questions, and any information passed on in conversation. No registration, no storage. The patients cannot recall what is not stored.
When we understand what they’re up against, we become more patient, more understanding and more helpful. We become their cheerleaders instead of their commanders. We make the effort to elicit from them pleasant words and actions, rather than communicate with them in a way which extracts their meanness.
(4) Kill Meanness with Kindness
Entering the Alzheimer's World with the intention of understanding the patient's dilemma makes us better, kinder persons. We smile more often. We stop seeing our duty as merely ADL (Activities of Daily Living) facilitators; we commit to helping them enjoy, not just endure, the life they have.
How often do you read articles or books about Alzheimer's disease?
Developing the characteristics of God's Spirit—love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control (Galatians 5: 22, 23 NLT)—becomes an actual experience in our role as caregivers; and the best part of all this is that the new person we become transfers into all our other relationships.
The patient becomes a new person, too. My mother seems more trusting and definitely less mean.
As a result of following these steps, now I can suggest to others who worry about their patient's meanness not only why it happens, but also how to defuse it. My fearful, frustrating situation has turned into a happy (sometimes), learning, sharing experience.
DeMarco, Bob: Alzheimer's Reading Room, When Dementia Patients Say Mean Things, What Can You Do? (9/17/2013)
Larkin, Carole B. MA, CMC, CAEd, DCP, QDCS, EICS; Alzheimer's Reading Room, How the Loss of Memory Works in Alzheimer’s, and How Understanding This Could Help You, (11/22/2014)
© 2015 Dora Weithers